"Autism is me": an investigation of how autistic individuals make sense of autism and stigma

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Botha, M., Dibb, B., & Frost, D. M. (2020). "Autism is me": an investigation of how autistic individuals make sense of autism and stigma. Disability & Society, 37(3), 427-453. https://doi.org/10.1080/09687599.2020.1822782

Publication date: 6 Oct 2020 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)
  1. Monique Botha *
  2. Bridget Dibb
  3. David M. Frost

Abstract

There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N = 20) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understandings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure strategically. The implications of these findings are discussed further in the article.Points of interestAutistic research participants consider their autism to be value neutral – akin to any other feature like race or hair colour.Participants feel that society sees their autism as being a bad trait to have.Participants struggled with the tension in how they see themselves, versus how they believe society sees them.Participants are caught between disclosing that they are autistic and concealing it, but feel they are treated negatively either way.Participants use the word “autistic” to reclaim autism from stigma, and to reframe peoples understandings of autism to be less negative.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 07:59.

Cited references
115
With a DOI
92
Without a DOI, from raw bibliography text
20
11 / 115 (9.6%) cited references include at least one author identified as autistic.
References with data to complete
9 / 115 (7.8%)
References with detected author names
108 / 115 (93.9%)
Without detected author names
7
Without a structured title
7
Without a stable identifier
16
References with raw author names still to review
5
References with external metadata lookup issues
1
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
273
From DOI or external metadata
272
From validated raw bibliography text
1
Raw names already validated
1
Raw names still to review
5
80 / 273 (29.3%) names are linked to an author already present in AutiHub. 193 / 273 (70.7%) names are not yet linked.
Names linked to a person identified as autistic
14 / 273 (5.1%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 14 / 80 (17.5%). Distinct people identified as autistic: 10 / 242 (4.1%).
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